Day 1,581: The Drugs Don't Work? One Year Post-Chemo...Again

One year ago today, I finished my six month round of chemo. It was the second time that I did chemo for the last time. The chemo I chose was an "old school" model; it seemed more innocuous, in that it didn't throw me into menopause, I could eat, and I didn't lose all my hair. But over the long course of six months I had a variety of side effects and issues, both large and small. Part of the thing about chemo is that all the outside world considers about it is the POISON aspect. They think about how it kills your immunity and your hair follicles. Well, not all chemo does that, or at least not to the same extent. My blood counts stayed excellent throughout chemo last year--until the massive hormone changes brought on by the drugs (something almost 100% of women and girls experience from chemo, though it isn't talked about as much) made me bleed so heavily and for so long I became anemic. I had terrible vertigo while on chemo; I hardly realized how I walked, and even drove (I shouldn't have been driving, probably, at least not towards the end) in a state of constant crookedness. I was often in a near-faint. My hair thinned. I had terrible fatigue; something I hadn't really experienced the first time around. The AC chemo brought me to my knees, to be sure, but this MF chemo was a sly one--I would feel ok and then my body would just give out, I would feel as if I could not move. I had chemo brain, and truth be told, I still have it. I am oddly ashamed of that fact. It has gotten better, but for more than a year I couldn't concentrate enough to read a book straight through. I wrote lists of things, including people's names. I couldn't remember anything. And please don't tell me I'm just getting older, or that I'm a mom, or any of that. Those things are true. But on top of that--on top of all that--I was going through six months of chemo, and it caused chemo brain, which is a terrible name for a very real problem.

This is all to say that chemo is awful.

And I did it again, and I would do it again, if I have to, which I really, really, hope I won't.

I say this knowing it might not have worked for me either time. My oncologist was honest with me about that when he told me the second time that he understood if I didn't want to do chemo again. He said, there's a high probability it won't work for you, because there's a high probability you won't need it. But there's nothing else for you, so if I were you, I would do it. We could give you different chemo. I asked about platinum-based chemo, saying I didn't want to do that, and he said that for someone like me, TNBC, but not BRCA positive, no evidence of a DNA-repair-resistant disease, very early stage, with all the cancer successfully removed, there was no evidence that would help me above anything else. We sat there looking at each other, contemplating the absurd crap shoot. I railed against the idea in my mind. I said I still didn't want a port, even with six months of infusions. I said I didn't want to take side effect meds (and I didn't--none at all for six months; they gave me half a dose of Zofran through my IV before each infusion to make sure I wouldn't vomit up the drugs, and I relied on acupuncture to help with all the other side effects).

And then I danced that dance again, and started chemo two weeks before I started a brand new job based in another state. I did the second round of chemo with my family. I say that because we went through it as a family, and almost as a family alone. Friends and others had a hard time knowing what to make of a person doing chemo AGAIN. Wasn't I supposed to be done? Didn't I beat that already? It couldn't be that bad, right?

Of course, it was bad. In some ways, having to do chemo again was more devastating for me than having my breast amputated--in fact, it was more devastating without a doubt. But here's the thing. We have created this weird cult of personality for chemo. We talk about chemo, and oncologists, and cancer treatment, in a way that we don't talk about any other health issue or disease. We've created a cancer conspiracy, where chemo really kills you, and oncologists want you to suffer and die, and the poison will take everything good from your life.

And yet...look at me now. Look at me for almost the last five years. You can go through hell and come back. Some people go through hell for their entire lives. Many people with epilepsy do this. Anti-convulsants are just as poisonous in many ways as chemo. What is chemo? Chemotherapy just means chemical therapy. Most chemos, though not all, are derived from plants. They are no more unnatural than anything. Hell, there are berries and mushrooms in the pristine wild that will stop your heart in an instant. You can go on and on about the health benefits of pot, and you're welcome to, but you might get some with some bad chemicals put into it by some shady dude and be screwed. There are "natural" supplements that cause heart disease. My liver was poisoned by Depakote (a drug that caused high levels of toxicity in my body and that I would hate to take ever again, but that other people take gladly for depression, not just seizures) years before it was poisoned by Methotextrate. When I was 26, I had my gallbladder removed, and they showed me a picture taken with the laproscopic camera of a liver that belonged to a 65 year old alcoholic, not a 26 year old who was straight-edge for almost all of college and then some.

When I went in for chemo, I refused the drugs other patients asked for more of: Benadryl, Zofran, Ativan. If chemo brought me to my knees, those easily-accessed, common drugs made me feel like I had no knees at all.

So it was hard. And yet here I am one year later, one year after "finishing" chemo...again: active, healthy weight, fertile, still relatively brainy, kinda cute hairstyle, the only adult I know who hasn't gotten a cold or flu this winter. My immune system is kicking ass and they gave me a raise and a bonus at my job and my kids are a year older and my husband still loves me and my friends still tolerate my eccentricities. You do it, and it ends. Or even if it doesn't, you do it. Because what else is there to do?



This leads me to what will be a short discussion of this very disturbing story about the 17 year old girl with Hodgkin's lymphoma who is being forced by the government to do chemo. This story is unbelievable to me on many levels. The first is that agents of the government believe they have the right to force drugs into someone's body. She is a minor, I suppose--but barely. How is it possible that they can force her to have a port? I didn't agree to that, and I refused to be treated at a hospital that would have made me have one placed. Port surgery is real surgery. Can the government enforce surgery? The port itself is not life saving. The side effect meds are not life saving--are they going to force her to do those too? Where does it end? Could someone have done that to me? Could they have said, but we think it's better for you to weigh 118 pounds and never sleep at all for a week at a time than to be nauseous, 110 pounds, and sleep at night? Because I would beg to differ.

Who gets to decide? The answer is obvious: she should. And please don't start in on things like measles, or ebola, or leprosy or smallpox, and the government making demands about vaccines, medication and quarantines. No one can catch cancer. No one else has their life put in danger because I, or someone else, has cancer. You and you alone suffer through this disease. The same is true for all non-communicable diseases.

She should have the choice. But the second thing I don't understand is why she would make that choice. Her cancer is incredibly survivable with chemo and incredibly deadly without it. To believe otherwise is to believe in the conspiracy. Where did that idea come from, who started the story about the cure being worse than the disease? Have you ever seen someone die from metastatic cancer? It is a horrible death, natural or no--people rarely go out without extensive suffering. Cancer is not a heart attack. And in this case, hers is not a gray area like mine, where no targeted treatments have been developed. I did chemo knowing it might not work, that the chances were high that it might not, but also knowing that there was no Herceptin or Tamoxifin or anything else for me. Women with all kinds of breast cancer do chemo knowing that if their cancer metastasizes, they will have terminal cancer. Not all cancers are that way. If I had been told that I had an 85% chance of being cured with chemo and an equal chance of not living to 20 without it, I would have probably put the needle in my arm myself. Those kinds of chances are a gift straight from science. It's a modern miracle. It's the legacy behind a woman I see at my local pool who has raised three boys and is almost 30 years out of the same kind of cancer this young woman has. Her biggest medical complaint these days is (natural) menopause. If I hadn't shown up bald at the pool, I never would have known she had cancer in her early 20s, had gone through extensive radiation and chemo, had a recurrence, and survived. It's not like you can TELL.

But it isn't for me to say.

What is for me to say is that chemo is chemo, it is an attempt to eradicate a disease that is not well understood today but it much better understood than at any point in history. Chemo is very hard on the body, but the body can be very hard on itself. Drugs were hard on my little body as a child as well, but they led me from a place where I had 100 seizures a day and inevitable brain damage and cognitive delay to a place where I had zero seizures a day, a normal childhood, and a chance for an intellectual career.

Sometimes it's true that the drugs don't work, they just make you worse. And sometimes, that's just a song to sing when you're feeling hopeless. I am so grateful to not be in the middle of chemo right now. I am so glad to have made it a year past treatment. And yet, there is a part of me that is afraid of this one year mark, because if my cancer is bound to come back, it will probably be in the next few years, and I will be that much closer to the potential end of my life, which seems more unbelievable than any other thing.



How could this person be sick? How could this person be dying? What a world.

It's better to live in it and be of it than to turn away from it in fear of what it might do to you.

This is just to say. A year later, and I'm still trying to walk away, still exhibiting too much attitude, still writing this, still here.

Day 1,569: KatyDid 2014 Year in Review

I have a confession. I have absolutely no interest in seeing Facebook's idea of what my 2014 was like, and since I keep it real here in cyberspace, I'll admit that I have yet to click on a single one of those recaps. Since there's some kind of strange, unseen pressure to write blog posts that coincide with events, such as the turning over of the year, I thought I would do something different with my own recap. Here's the KatyDid 2014 Year in Review. See if you can tell what I did here.



No one ever wants to hear anyone talk about death, especially people who have reason to believe they might die sooner rather than later. But I have cheated death 5 times--5. I don't have to apologize anymore. I have little to no nostalgia about the past--I think about it a lot, but I feel no loss or longing. I long for the future. I want to keep telling stories. I want to have stories to tell that take place in 20 years. I want to just be healthy and live in my body like it is a normal body, though it never has been, regardless of what it looks like, this body is a story in itself, a character in its own right. May it take a long, long, time to get to the end.

And so it goes. These things can be said in the same tone as many other things: I woke up today and could no longer walk. I had 100 seizures today. I am in a wheelchair, I need someone to move my body so I won't get bedsores. This medication is poisoning my liver, but I need it to avoid potential brain damage from seizures. My gallbladder needs to be removed. There's a gun at my head--a real one, all metal and coldness. I am a baby but that penicillin nearly killed me. I am bald. I had my breast amputated. I am hugely pregnant. I am too skinny due to chemo sickness. All of those statements describe things that have happened to the body, to my body. But it is just a body. Its purpose is not to be beautiful, to look young, to be a subject of comments from strangers. Its purpose is not even to help push through suffering, nor to experience joy in all the things it can do.

Those decades of others defining me by my hair were just that--other people's opinions, other people's judgment. It had just about jack shit to do with me and who I was.

I have written about (my son’s) night terrors, and yet…I have not. I have not written about the look I see on his still sleeping face, when his eyes are open and there is something in his eyes and his scowling face that I have never seen on another person before, a look of pure rage. And then, he begins to fight. He jumps up and down, he flails, he screams in an inhuman fashion, he throws things—all kinds of things, including his favorite things. He throws with perfect accuracy, at the thing, that bad guy, RIGHT OVER THERE, as he points, and fights. He fights the thing that makes his team miss the field goal, the thing that does things he cannot mention, he fights us, he fights himself. His fists pound, he gnashes his teeth, he screams “DAD! CAN YOU CAN YOU CAN YOU!” He screams that he has to tell us something, but it is something he cannot say. I try to comfort him and sing to him and do motherly things and he looks at me as if I am not there, because I am not, I am not in his dreamworld. I am in his real world, the world where cancer ends and death is not hiding right behind the edge of his door. I exist in his world where the edge has not been built yet, where there is nothing so monstrous to fight, where throwing things is not a way to save your life but a thing you do with your mother in the snow in the sun in the yard in front of your house.

There are things that are acceptable to say about cancer. It is not my job to say them. It is my job to say what I feel needs to be said. And so I will end by saying that I have had cancer, probably for going on 7 years now, and while it is a part of me and always will be, I wish it weren't so. I wish I could promise my family and the people who love me that I will be there for them, in the future, in the beautiful promise of thousands of tomorrows, but I cannot. All I can do is this, all of this, as long as I can, as best I can, as me as I can be.

I have been thinking a lot about the concept of "choice" recently. We are bombarded nearly every day with this concept, with this notion that life is just a series of choices that are laid out before us, and the content of our character can thereby be judged by whether or not we made the "right" choice. The thing is, I think that the whole concept of choice is actually just privilege in disguise.

There was death, looking right at us, lingering in the corner right next to life. And there it was...AGAIN. So many things have happened. And yet somehow, through all of that, the initial drama, the kids, the cancer...it's like we've been on a really, really long date for the past 11 years.

We started to ride. We were sprinting. I was thinking about the time when Gabe and I went to Maine, for my 28th birthday, when we had been dating a handful of months and were newly in love and our lives were laid out before us like the lighthouses beyond the black rocks. And then, I began thinking about a conversation we had last night, in bed, about whether or not he saw me as disfigured. I don't normally see myself that way, but for a fleeting moment, I did. And he got very quiet and said nothing. I asked if he missed my old breast. I thought he wouldn't answer me. And then finally he said "a little bit. but it's not about how you look...it's just..." and his words fell away and I knew what he meant: I miss how it was before--before we knew. Before it happened.

I am not super-maternal, so I don't miss the baby stage specifically. I miss the opportunity to have brought another interesting person into my family and the world. I have dreams about kids who don't exist and never will. I have fantasies that I don't even tell my husband about, where we take in some wayward youth, some teenager who has no other place to go (Gabe has always said we would do that, as if it were a given--it's one reason he wanted a bigger house, I guess because he feels the need to pay forward what others did for him), and part of the reason that I think about that is because I don't really believe that I will live to see my kids become teenagers. I believe it is possible, but I no longer feel it is likely. So I have these thoughts and then I let them go. I don't cry, I don't get lost in nostalgia, I just feel loss, and even though I am stoic and always have been, even though some people have told me I'm the wrong kind of mother, the wrong kind of woman or wife or whatever, I still feel this loss. And it's real. And it's because of cancer.

She has always been the sensitive, quiet type. And I don't mean she is actually quiet, though I suppose around strangers she is; she even manages to act shy around her closest friends until she warms up to the idea of them being there. I mean she is quiet in that she's not talking. She keeps everything to herself--especially the bad things; her fears, her concerns, her pain. This is the kid who potty trained herself at 2.5, and in the middle of the night we would hear her get up, run to the bathroom, flush, wash her hands, and put herself to bed. She would take care of her own nosebleeds, no matter how severe; sometimes, we would go into her room in the morning and witness the blood bath. Why didn't you come get us?! we would ask, and she would shrug and say, "I didn't want to bother you." She is not particularly affectionate, has never been cuddly. I know a girl like that.

At one time, I was a planner. Then, the plan changed. As all mice and men know they are wont to do.

I want women to be considered brave for being brave, not for looking "other." I want people to give cancer patients credit for staring death in the face and shrugging their shoulders, not for coping with disfigurement with grace. As women help their children plan their futures, knowing full well they might not be there to witness them, I want people to notice the resigned and wistful look in their eyes, not the hair on their heads or the swell of flesh lying on top of their broken hearts.

That's what we have--science and faith and hope, technology and art, progress and the knowledge that some things never change. All we have is this human striving for immortality, the one thing we collectively know is impossible to achieve. And because we know that desire is futile, we try to do something that isn't. It's in that space where we live our best lives.

And so again I ask, who am I if I am not a fighter? And really, what am I supposed to do now?

And now, I am still sprinting, but they are micro-sprints. There is no 26th mile. There is no 5 k. There is the house three doors down that my mother let me run to as a child, and I know that when I reach it, I have to just turn around and run back. That is what I am doing right now--running back and forth between what is happening this moment and what will happen in the next few hours. There is nothing beyond that. There is race after race, but they are suicide sprints.

I couldn't foresee that I would be in the same boat three years later, but that is not what is relevant today, on May 4th. What's important is that I'm still in the boat. I haven't capsized yet. Thanks to those who are still swimming next to me, still standing there with a life jacket. One of these days, I'll meet you at the beach.



And then, he did the thing that only Augie does, that someday too soon he will be too embarrassed to do. He grabbed my face with both of his hands and swooped in for his kiss, and then gave me a crushing hug. And then we just looked at each other for a minute, forgiving each other for how hard we've made it for the other by feeling everything so completely, nodding at each other, acknowledging the life and death that tie us together and make us ask imploring questions in the dark.

What I do know is that the fog is lifting for me a little around here. I can imagine making other decisions, reading great books again, maybe even making plans. I can imagine living a long life. Even if it doesn't come to pass, I can imagine it. I can see myself the way others see me, as the one who did things they had never seen before, who gave voice to things they were afraid to bring up, who just kept taking the hits because having wounds that heal is better than being knocked out cold.

So, I get you, with your exuberance for the little things, your sheer force of will, your impatience and your rhythm and your lack of self consciousness and the deep thoughts you have and your interest in the whole world including the things you know are too old for you like sex and whiskey. You try me, because seeing you is like seeing myself, though you are a tad wilder and a much better liar. And I remember what was going through my mind, and the things I plotted, and I know we have our work cut out for us. The chickens have truly come home to roost.

That--that thing you told your brother, that made him nod his head like it was the most natural thing in the world: "She will always be our mom. Even when she's dead." And if I believed in a different type of existence, I'll tell you what. I'd be damn proud of you both, even then. Even when.



I remember being young, and keeping journals. I remember how I rarely wrote when I was happy. I remember that my best poems are the saddest ones. And I know that we have been given a range of human emotions for a reason, and that we should not ignore those that are hard to feel in favor of those that are easy to feel. I remember when I wasn't afraid of grief.

I stayed up last night listening to the loons call, right off of our dock, so close it was as if they were in the house with us. I asked Gabe if they were nocturnal. He said he didn't know; maybe they were, maybe they just acted like it sometimes. I thought that was a good answer. It was a beautiful night and the wind had been so strong that some of the bugs had blown away. Maybe they knew it was impossible to tell when they would get another night like that, and they didn't want to miss it. These days, more than ever, summer is like that.

But I've said it before in this forum and I will say it again--not yet. Not yet. I've said those words to myself every single day of the last year, of the last four years, really. The ability to say them is a privilege denied to many. So what can I say but enjoy your years, and the age they bring. Live in the skin that holds you, not the skin that holds someone else or the person you might have been.

You know, a lot of times, some good comes out of responsible adults forgoing power for the sake of it. Sometimes, it's good to hide knowledge from people you love in order to protect them. Maybe there's a reason to close the gates. I'm just saying. Until I started writing this blog, I never revealed the deep parts of what went on in this mind, through all of the different physical and emotional trials. Just ask my mother. As a kid, I wasn't talking. And so what? Does that mean I was damaged? Maybe I spared others the specter of my thoughts. Maybe that's a real thing, and not a bad one. Maybe women can be nuanced, not just literally fire and ice.

And though my mind was not lost in other thoughts, and I did remember and think about what my family didn't say, now I can know this: I have given my family the kind of summer I remember. Maybe we have had those kinds of summers all along, no matter what else was happening. My children have had summers just like the ones of my childhood: colorful but already faded, busy and lazy, stubbornly placed outside of the real world, full of nothing more than the memories you'd like to keep.

I didn't cry when they were born. I didn't cry when I found out I was pregnant with either of them, even Augie--and I never expected that it was possible for me to get pregnant again. I haven't cried for any of their transitions with schools and child care centers. I can't think of any milestones that made me cry. Of course, this doesn't mean I haven't cried over my kids. I cried a whole hell of a lot when I was first diagnosed with cancer. I cried just from looking at them. The whole thing just broke my heart, to think what I had to give up, what I had to stop doing, what I might miss. I cried when I saw other people's children and teenagers. I just cried and cried and I felt like someone else.

And this, this writing, is the one thing I have always done, without feeling like I should be doing something else, without worrying about whether I'm any good at it, without caring if anyone read it, without it seeming like work. I've had 39 years of stories to tell and a way to tell them. I hope to have many more, but I know I might not. These years are something that for all intents and purposes should never have come to pass, not considering everything else that's happened.

It's a fiction, and we know it. It's a story we tell in the hopes that it might come true. No one here expects a happy tale, but we would like it to be interesting. We would like to tell each other the story arc and choose our favorite characters.

And now I want to enjoy what I’ve built here.

I'm tired of it, and that's why I haven't written much lately. Sometimes I am absolutely astounded when I think about the fact that I have had cancer, much less that I have had it twice. It doesn't seem possible, and yet I can hardly remember not being this person. I feel like my marriage to cancer has wilted on the vine and maybe it's about time for me to take a lover.

I want to live in this world, with its moments large and small, moments of real grace. I want to live in a world where people have seen enough of what the world really is to look at each other knowingly, without pity or sorrow, and silently affirm that when it all started, we were all beholden to someone else to survive, and it will be that way again, and again.

My mom made a toast at the wedding. It was the only one. She said "here's to ten more. and ten more. and ten more. and ten more. and ten more. and ten more."



I think of age as the privilege of seeing your life as a really interesting story that is sitting on the bottom of the pile of millions of interesting stories. I think of age as not having to worry about leaning in or leaning out but rather just...kicking back. Kicking back and flinging the ash off the cigarette that you're not supposed to be smoking and that you're probably holding wrong and just watching the people pass judgment on you one way or another and not noticing anything but the curl of the smoke.

At the end of the day, I don't think kids care who is a default parent and who is a back-up parent. I don't think kids think about their parents like that at all. Kids love their parents for being their parents. For all the kids out there who have an actual default parent, because the other one is dead, the only thing they wish is that the other parent was still there, being imperfect, watching basketball and yelling at them about shoes, going out to work or the gym or for a walk, but at least, miraculously, coming home again.

So on Thanksgiving, maybe that is what we should give Thanks for--the opportunity to experience life in fellowship with others. We should give thanks not just for being lucky or blessed but for knowing what luck and blessings are and how easily they can be stripped away. We should reflect on the temporary nature of our luck, and the permanent nature of our temporary-ness.

Sometimes I feel that I am always telling this story, the same story, over and over again. It is not a story about cancer. It is a story about luck. It is a love story. It is a story about the things you say when there's nothing right to say. Every story we tell about ourselves is really a story about someone else, and I don't mean it's a story about who we were or who we might be--I mean it is actually a story about other people. It's in the reflection, the looking back, that we see not only ourselves but all the others that are standing nearby.

Remember how magic works. Augie told Lenny that it's not just that Santa is magic. That's not enough--that wouldn't get the job done. So how does he do it? Remember this: "He stops time."



That's 2014, folks. A paragraph from every KatyDidCancer post in 2014, from the beginning of the year when I was still in the middle of chemo, until today, when I am still in the middle of life, where I've been all along. Thanks for joining me.

Day 1,566: Sesame Street Christmas

When I was a kid, we watched Christmas Eve on Sesame Street every year. I had a brainstorm the other day to order it from Amazon so my kids could watch it too. The show first aired in 1978, when I was three years old. The plot goes something like this: Oscar makes Big Bird paranoid that Santa is too fat to possibly fit into the skinny chimneys. Meanwhile, Cookie Monster is trying to write a letter to Santa about wanting cookies, but he ends up eating the pencil, the old-school typewriter, and even the phone. Down the street, Bert and Ernie get Mr. Hooper entangled in one of the most endearing Gift of the Magi stories ever told. And in the background, all the time, there's that perfect 1978 Sesame Street backdrop of the most diverse cast ever brought into a show. The kids that were brought in as extras, all of whom must be older than I am now, are still adorable and endearing. The story is a great one. But it's the version of Sesame Street itself that I love.

I think of my old neighborhood like that. People playing street games. Newspaper stands. Kids wandering around by themselves. Other people's parents looking after me. Working moms and single parents and apartments. Taking the subway. Metal trash cans in the alley. And when Maria just GIVES IT to Oscar for starting all the trouble, and it's like her superpower is making people feel bad about themselves because they deserve it? Yeah--that.

You've got this cast of crazy characters. A guy who is, according to my daughter, "just plain mean." An oversized bird who talks to an imaginary friend who isn't imaginary at all but is rather, well, what the hell is Snuffy? Grover interviewing the kids about their responses to how Santa gets down the chimney ("nope, he goes through the window") and everyone takes it absolutely seriously. Bob who sings cheesy songs after telling Linda she should read a magazine or something since she's deaf (WTF?). People with very ambiguous relationships. Gordon carrying little Patti around, because her mom was all, oh, yeah, she can come to your place if Big Bird doesn't come home.

I know we were characters in our old neighborhood. So were so many other people. Sometimes I wonder if there are neighborhoods like that anywhere in the world anymore, with that level of economic and racial diversity and poverty right next to the working class and solidly middle class and renters and homeowners interspersed. And then sometimes I wonder if it was like that at all, or if I just remember it that way, but no, I think it was really like that. Sometimes I have no idea how to do things in my life the way my life is now. Gabe doesn't either. And I know that we are characters in our new neighborhood, but sometimes it still doesn't seem to fit. He will always be the guy who will eat your kid's leftovers because you never know when you will eat again and I will always be the girl who is looking over her shoulder while driving the getaway car, waiting to be pulled over.



I don't know how to be any different than I am, loudness and hand gestures and swearing and stubbornness and all. I don't know how to pretend things are ok when they're not. I don't know how to sugarcoat things or hide the truth from my children.

OK, that last one is a lie. I do know how to help them believe in magic. I know that years ago, when she was only 5, my daughter walked up to Gabe and told him that she had thought for a while there that Santa was really just us, putting presents under the tree after we went to sleep. Then, she realized it couldn't be true, because who wants to wake up at midnight? So, Santa must be real.

That's the story she was telling her little brother last night, as we drove home from my mom's Christmas eve dinner. Augie, how realistic is that? Why would you want to get up if you were already asleep? Why would you wrap presents for yourself, knowing what they are already? It doesn't make sense. Of course Santa is real.

Of course.



Big Bird learns that. Santa comes while he's asleep, and much to my kids' chagrin, we never get to see how he did get down the chimney.

It's magic.

It is magic. It was magic when I was 16 and it was just my mom and me at home and I was an insomniac and I still could not stay awake on Christmas Eve--because let's be honest, I didn't want to stay awake. It's magic that I never, not once in my entire childhood, tried to find the presents, and it's magic that neither of my kids has ever done that either. It's magic the lengths we go to, all the places there are to hide, the way we who are so loud can learn to whisper, it's magic that little brothers don't always believe their big sisters when they tell them a seemingly impossible story.

My son has his own ideas about how Santa does what he does, and that's what I want to leave you with this Christmas. But first, let's remember what those Muppets had to teach us. Let's remember that it's worth it to sacrifice your most prized possession to give your best friend an empty box. Remember that Mr. Hooper, who doesn't celebrate Christmas, didn't want anyone to have to be sad in order to make someone else happy. Remember that your friends and family don't have to be perfect, or cheerful, or able-bodied, or young, or important and visible to other people, to be your friends and family. Remember that beautiful things happen whether or not you witness them. Remember that someone might be looking for you when you disappear.

Remember how magic works. Augie told Lenny that it's not just that Santa is magic. That's not enough--that wouldn't get the job done. So how does he do it? Remember this:

"He stops time."

Day 1,551: It Ain't Over Till It's Over

Four years ago, I wrote a post about finishing cancer treatment.

Except that even then, it wasn't really about finishing cancer treatment. I wrote about how anti-climatic it all was, about how ambivalent I felt. I wrote about writing, and what it meant to me. I wrote about what I had lost, and what I hadn't lost, and how I figured out which was which. I revealed two of the most emotionally painful things that had happened to me during cancer treatment. I wrote this:

"I am not going to be one of those people who says that cancer gave me a gift, and I am not going to smile about the hope and inspiration it brought into my life. Maybe I should, but that’s not me, and those words seem pretty hollow, so if people wanted to hear that I assume they stopped reading this months ago."


December 10, 2010

I never, not once in that blog post, said that I would never have to do it again. I celebrated it being over without trying to say that I knew for sure it was over. There was no ass-kicking, no champagne, no sense of triumph. The only thing I did was rip the radiation tape off my chest in defiance, taking some burned, raw skin with it and making myself cringe in pain. Other people might have gone out to dinner, I maimed myself a bit and moved on with it.

And then years later, I moved even farther out of the realm of what a breast cancer survivor is "supposed" to be, and took up residence in this place that no one wants to visit, where the casseroles are long gone and the sight of the natives brings fear. I moved to the land where cancer comes back.

And by moving there, I was relieved of the burden of being the "right" kind of cancer survivor. But there was another uncomfortable truth as well. I bore another scarlet letter, and it wasn't just because of my recurrence--it was because of this, all of this WRITING, this telling of the tale the way I really saw it, right from the beginning, right from day one, back in May of 2010, when I had just been punched in the face by cancer but I could still see it clearly in spite of my black eye. Even then, it was true. On Day One, I said this:

"I have never taken my health for granted. After having epilepsy and living through a terrible car accident as a child, I've always been happy with what my body could do. I can walk, drive, swim, deliver babies, and do all kinds of things that other people can't do. Whatever came at me as a kid, I dealt with it. I dealt with smaller things as an adult pretty well too.

I don't want to think my luck has run out. I hope you'll all see me out and about, lopsided, bald, what have you. I plan to try to be a cranky old lady because in a way, that's what I've always wanted. You know, just so the personality can fit the appearance."

I failed at the narrative.

I didn't tell the story I was supposed to tell. I didn't tell the story of triumph over adversity--I never told that story, not even before my recurrence. I never told the story about how cancer changed my life and made me a better person and gave me a wake up call. I had my first wake up call at 6 years old. My body, and my brain, didn't work the way they were supposed to, not even then. I had to poison myself, even then. I had to accept that I had a disease that killed people, in absurd and random ways. People with epilepsy died in bathtubs. They died walking down the street. They died in their beds. Sometimes, they had seizures so severe that they didn't die but they were left with permanent brain damage or physical disabilities. Those people did not deserve to have those things happen to them, and I didn't deserve to NOT have those things happen any more than they did, and I knew it. And life kept happening, reminding me of that again and again: the things that happen could happen to me. There is no "other." I'm the other. We all are.

Well, of course I told EXACTLY the story I was supposed to tell, but I mean, that's the way you are led to feel. The breast cancer narrative that our society believes in is not the same as the one that is true. The cancer I've written about, all the different difficult things I've talked about that aren't related to cancer, none of it is the story I was supposed to tell. But if I can say one thing that I am glad for, it is that I never led myself to believe that I was fighting a war, that I was in a situation where my cancer and my character intersected. I didn't blame myself for having cancer once, and I didn't blame myself for having cancer again. Cancer treatment was cancer treatment, not a battle plan. There was no definite end. I wasn't taking names.

I look back on the blog post I wrote four years ago today, and I am proud. I'm proud of myself for having written something that would not be painful for my future self to read:

"I look through all this and I realize why the battle metaphor is so stupid, besides the misplaced machismo wrapped up in it. Battles end. I am done with treatment—for now—and I wonder what the hell I will do with myself, but cancer is just a part of me now, and always will be, even when 2010 has come and gone. I plan to make myself write this blog at least once a week, even if no one reads it now that I’m done with the technical treatment. I still have a lot of things to say about cancer, about illness, about gender, and some of these things are things I have always wanted to say but never did because I was too busy to sit down and write about them, or because I thought no one would give a shit."

I wrote about wanting to be realistic without being morbid, about wanting to provide others the opportunity to know they didn't owe the world a specific story, about wanting to teach my kids what it really means to be a woman in the world. And that's what I was giving myself, that gift, even then: the gift of remaining myself, of holding onto myself. I was allowing myself to not have to be made BETTER, to not have to feel like there was something wrong with me in the first place. If I had tried to be remembered for being an inspiration, it would have been crushing to have to settle for being remembered for my ability to just keep putting one foot in front of the other.

Sometimes I feel that I am always telling this story, the same story, over and over again. It is not a story about cancer. It is a story about luck. It is a love story. It is a story about the things you say when there's nothing right to say. Every story we tell about ourselves is really a story about someone else, and I don't mean it's a story about who we were or who we might be--I mean it is actually a story about other people. It's in the reflection, the looking back, that we see not only ourselves but all the others that are standing nearby.

I don't think my story has changed. It also hasn't ended, and for that, I am lucky, and glad. I want to continue to be able to keep my eyes open and see the world as it really is, without letting it bring me down too far into the abyss. I want to just be myself.

When I was eleven years old, I had a grand mal seizure in the middle of school. The entire sixth grade witnessed it. I had been "cured" of my epilepsy at 8, but even then, my body didn't follow the rules. I was thrown into the land where diseases came back right there in that elementary school classroom. My parents were having a very rough time at that point, and my mother was newly working. I was picked up from school by a neighbor; it's one of the only times I can think of where that "emergency contact" needed to be used. When my mom was able to get me, she felt so guilty for having been at work. She kept telling me she was sorry she wasn't there for me.

There are so many things I could have said, or thought. I could have felt angry or ashamed. I could have said nothing. I could have given her a hug and cried on her shoulder.

But who am I kidding? I could no more have done those things than fly.

I shrugged my shoulders and laughed. I said: "That's OK, mom. I wasn't there either."

Day 1,539: Giving Thanks

Thank goodness for all of the things you are not!
Thank goodness you're not something someone forgot,
and left all alone in some punkerish place
like a rusty tin coat hanger hanging in space.

--Dr. Seuss, from "Did I Ever Tell You How Lucky You Are?"

That is the Dr. Seuss book I grew up with more than any other--that and the Sleep Book. No Red Fish Blue Fish. No Green Eggs and Ham. No Cat in the Hat. Not that one that everyone reads at graduations. One Dr. Seuss book about not feeling sorry for yourself, one about learning to go to sleep, and one called Hooper Humperdink, which was about the kid no one wanted to invite to the party. My parents chose wisely with books--I can see that now.

For the past five years, I have dreaded the notion of writing Thanksgiving posts. I've dreaded it because of the societal expectation that I am now gracious and thankful because I have had cancer (twice) and I'm not dead. I've dreaded feeling like I have to explain that I was always a thankful person who had a pretty damn good perspective of the world; I've dreaded feeling the need to explain that I've understood mortality in a very real way for 30 years; I've dreaded having to say that I didn't need the lesson cancer was supposedly teaching me.

But this year, I feel differently. I feel differently not because I am thankful to not be in the middle of chemo during this holiday season--I mean, of course I'm happy about that. Last year at this time, I looked and felt like a ghost--a true ghost, a cold, pale, tired wisp of a person. It's wonderful not to feel like that. But this year I feel differently because I think that the problem with writing Thanksgiving missives is not that some of us don't know what to say, but that we have framed the whole thing wrong. After all, is it productive to count your many blessings? Is it useful to recognize how lucky you are if you don't do anything with that knowledge?

I don't think it is so useful to realize you are lucky, if you do not do some real and meaningful work to think not only about others who aren't so lucky, but about the very real fact that luck might not always work in your favor. This is the time of year to give up on our false idea of meritocracy and realize not only that most people do not deserve their misfortune, but most, if not all, people do not deserve their fortune either. This is the time of year to realize that when you stop to reflect, maybe you should just stop.

Maybe it isn't about you.

That is all my long way of saying that I have decided to write my annual Thanksgiving post about suffering.



Suffering is real. In the United States, we like to pretend that it is not. We pretend that suffering is something that you can choose not to experience, that you can will away, that you can hide under positive thoughts or a fist pump and a smile.

I really do think that we pretend this with the worst of intentions.

We do this because when others suffer, we stop seeing them, and we start seeing nothing but ourselves.

How often do you hear people say, "I hate going to funerals." "Hospitals are depressing." Sometimes people are less charitable in explaining what makes them queasy. Those who are old, or sick, or dying are off limits. Folks even go so far as to say that they will hate THEMSELVES if they are less than the young and vigorous people they are today. In our recent collective discussion about the right to die, I felt so often that the conversation drifted off point. It no longer became a discussion about whether people should have control over end of life care. It turned into this discussion of "but she had SEIZURES. can you imagine?" Or, "I remember how my mom suffered and I wouldn't want to do that to anyone," or "it's so hard to watch someone you love deteriorate."

Yes, yes it is. And you owe them that, at least. You owe those you love the duty of witnessing their suffering and not turning away. You owe them that--the acknowledgment that the suffering belongs to them, and the promise that you will not deny their reality because it is hard. Those who are able should be able to decide how they want to go in a terminal illness situation. But let's not assume that they would all choose the same path. Let's not assume that they OWE us ANYTHING. You are not owed the opportunity to NOT witness suffering. You are not owed painless memories. There are people--in my own family--who have scores of disastrous seizures every single day of their lives and have for decades. There are people who cannot do many of the things that most of us think of as essential who are living full and meaningful lives--even if those lives involve suffering.

When did we learn to turn away from suffering? Have we forgotten about Mother Theresa, holding the lepers' hands? I just don't understand.

This happens all too often within the cancer community--especially with breast cancer, when everyone on the outside seems to have decided that suffering is optional or just plain fictional. The societal pressure to act as if breast cancer is simply a rite of passage or a fashion show leads to some truly sad things for those who have or have had the disease. We get separated from one another. Not always, not everyone, but sometimes. Early stage women fear women with mets. Women who have not had recurrences do not want to hear from those who have. Women who are long-term survivors long to take credit for it, leaving those who died early on to suffer after death in the wake of a "lost battle." Women yearn for stories of hope and wish that those stories transferred onto them.

But I just want to say this.

If a woman is suffering through metastatic breast cancer, that is not about me. If a woman dies from breast cancer, that is not about me. If a woman has an early, estrogen-positive breast cancer and all she has to do is have surgery and go home, that is not about me. The existence of targeted treatments for non-TNBC cancers is not about me. Hormone markers are not about me. Nothing except my experience is about me. So, I can be happy for those who have survived a long time or who have access to treatments that don't apply to me or who avoided other treatments I had to take. I can sympathize and empathize with women who will have cancer the rest of their too-short lives. I can see that their suffering and sadness and fear is real and individual and tragic and I can feel a real human case of oh shit, I'm so sorry, for them. I do not fear them. I do not turn away. I do not refuse to read their stories. I do not look to others for reassurance that I will be ok--they don't know that, and neither do I. I can look to others for reassurance that the things I am experiencing are NORMAL, because sometimes it is hard to tell in the land of the truly abnormal. But I know that the only thing separating me from a woman who is dying of breast cancer is luck, and maybe, just maybe--time.

Those women who sit on the other side of the cancer-luck stick are me. Not now, but someday. Maybe not because of cancer, but because of something. We will all suffer and die, and many of us will know we are dying and be unable to stop it.

I've experienced some of the fallout of obvious suffering myself. Sometimes, it's painfully obvious. Your friends disappear during chemo and show up again when you're "done." Or, it can be very subtle. People only want to hear about the ass-kicking part of things, not about the things that are hard. Women ask me about my diet, my genetic history, my stress level and all kinds of other things that are nowhere near their business out of some misplaced desire to understand how I am in this place--what did I do to deserve it?--so that they can feel assured that they will never, in fact, be me. Sometimes, the fear of suffering comes out in the seemingly positive: "You can beat this!" Oh hell, I'd love to, but no, I have no idea if I can.

Any time someone brings forth some horrible anecdote about something that has happened to them due to cancer I say the same thing, or something akin to it:

I am so sorry. Cancer is bullshit.

And those little victories?

So happy for you. Enjoy yourself.

We live in our bodies alone and we die alone but there is no reason we need to experience the in between alone, or in hiding. And some of that in between is almost indescribably hard. And that, too, is real.

So on Thanksgiving, maybe that is what we should give Thanks for--the opportunity to experience life in fellowship with others. We should give thanks not just for being lucky or blessed but for knowing what luck and blessings are and how easily they can be stripped away. We should reflect on the temporary nature of our luck, and the permanent nature of our temporary-ness.

Every year on Thanksgiving, Gabe and I split the wishbone from the turkey after the kids go to sleep. For the past four years, I am fairly sure that we both wished for the same thing, regardless of who got the lucky long end. This year, I "won." I asked him what he wished for and he wiped away his tears and glared at me. I know that he assumed our wish was the same, but he was wrong.

I didn't make a wish. I just smiled at him, and asked him to throw the bones away and lay with me on the couch.

I hope you all have many more Thanksgivings. Take care of yourselves.

Day 1,520: I'm Not the Default Parent

Now don't get me wrong, I don't think he is either. But I just had to write about this one.

This blog post about The Default Parent has been all over my social media feeds recently. It's one of those things that as a mother I am instinctively supposed to relate to, to understand. But I just don't get it. What, exactly, does it mean to be a default parent? Neither Gabe nor I feels that either of us is more default than the other. Now, he is a softie, and I am a hard-ass. But that doesn't make one of us more maternal than the other.

I am as default as my husband and vice versa. I find this article to be both troubling and enlightening. I didn't know there were parents who did not know their children's teachers' names. I did not know that as a parent, it was optional to be on the hook for the physical and emotional needs of your children. I did not know that as the one "with a uterus," all of the "crap jobs" would be mine and mine alone.

I was going to address the specifics of how we do things around here, but that seemed too much like trying to justify myself for not being the right kind of woman or mother or cancer patient or whatever. I have had women tell me they are surprised I still worked after cancer. Don't I feel guilty? Um, about what? Potentially dying? Well, um,...no. So, I'm not going to get into too many specifics. I will say that from the first paragraph of this article, I was baffled. She thought it was bullshit that her husband didn't move to deal with the crying baby when they were both engaged in the same task. What about asking "hey, who's going to get the baby?" I mean, if you are the one who takes care of business, you don't get to complain about it later. You got up to get the baby--fine. If you didn't want to do it the next time, you should just say, "hey buddy. baby's crying. what are you going to do about it?"

Now, we all do this to some extent--we do things and then carry resentment about it, as if it's the fault of the world that we did something. Sometimes I wish that there was such a thing as truly reversed gender roles. I am the one who travels for work. This means that my husband has to figure it all out when I'm gone. That means all of it--getting them to and from school, homework, music lessons, sports, meals. I know when I am out of town that the kids eat spaghetti and sloppy joes. I know the laundry won't get done. I know we are both kind of envious of each other--he is envious of me and the time I get to spend in a hotel room by myself and I am envious of him getting to put the kids to bed. I know that the kids will start to miss me on the second day and will start to have attitude on the third. I get annoyed when I come home and the house is kind of a mess, because I would really like to come home to a clean house one of these days and oh if only I had a WIFE! For those who think traveling is glamorous, maybe you all get to go to some warm and exotic locale but I am usually stuck in small midwestern airports and trying to decompress at the hotel bar at happy hour while married men who have removed their rings try to get me to meet up with them later. It's not appealing. So when I get home, I might get really annoyed at the piles of paper everywhere, but you know what?

My husband will be waiting for me, with a glass of bourbon in his hand. He will say "hey honey I missed you!" and offer to rub my back. Oh, how emasculated he must feel!

Please.

I told him about this article and he said "I think the idea of a default parent is a copout for women who let the guys off the hook and just take all the burdens on themselves. Plus, there's the idea that all this stuff is a burden, and it's not. There are rewards. It's rewarding." He also says this: "I think our parenting is pretty equal. I mean, there are things we are better at, or worse. The kids come to me for things a lot of the time, but when they really need to calm down, they go to you. Because you're better at distracting them."

Gabe is the one who plays with the kids more, who takes them to birthday parties and sports practice, who is in charge when I'm away, who is nurturing and cuddly and who lets them eat Lucky Charms for breakfast. He does the yardwork. I'm the one who cooks and does laundry and goes grocery shopping and buys their clothes and lays out Augie's clothes in the morning. He helps with showers and I address wounds. But here's the thing. No one expects him to feel guilty or inadequate because there are things I do well that he does not do. However, it is assumed that if I am not doing most of the stuff with the kids, I am not a REAL mother. I am just...secondary.

No matter that we both work full time, that my job is more specialized, or that I make more money. From a practical perspective, Gabe has always said that my job comes first, and he would need to make his work around mine. No resentment, no weird gender role thing happening, just reality. He began claiming flexibility at work when I was going through cancer treatment. He just told his office that when I had chemo, he was going with me. He stayed home with Lenny two days a week when she was three months old, as did I. He was in charge of Augie by himself for a month when I went back to work when Augie was six months old. They were shocked that he actually claimed paternity leave, but whatever. He leaves work early every Tuesday to deal with the kids' after school activities. Now, I pick them up every other day of the week, so, why should we assume that his Tuesday is more relevant? No one is getting a cookie for taking care of their own kids. Not him, and not me.

And let me tell you, we have BOTH asked the other what is going on when we find ourselves in charge of doing something the other one normally does. Gabe has thrown up his hands at me when I didn't feed Augie dinner BEFORE basketball. Was I out of my mind? I have had to roll my eyes at him when he has called me from the grocery store totally flummoxed as to what we might need. Um, has he looked in the refrigerator lately?

Here's the deal. If you are normally the one who takes Lucy to jazz class, it is not out of the question for someone else to ask you what time said class ends. Why should another person keep that information in their minds, if they don't normally have to use it? This is where women are making things too hard.

This is where sometimes motherhood becomes a contest in martyrdom. The Default Parent author claims that the Default Parent/mother does not have her own calendar, but rather keeps everyone else's calendar. But I have to ask, why is that? When did the kids or the husband ask you to stop planning things for yourself? We have this argument in my house all the time, but in reverse. I am the one who goes to the gym, who takes walks by myself, who announces my plans: "I am going to go do XYZ." I do not ask permission. I am almost 40 years old, and I don't have to ask permission. My husband is TERRIBLE about making his own plans. The truth is, he was terrible at it before we had kids. When we were dating, he was bad at it. Sometimes he gets sullen and resentful and is all "I don't get to do anything on my own without the kids." Well, honey, why is that? Are you waiting for your scheduler to do that for you? I am happy for him to do whatever he wants, but I am not going to be the one to schedule it for him. And the funny thing is, I've tried.

Let me give you an example. One day last fall I was a day out of chemo. I put on my pjs and so did the kids and we got ready for a cozy night of watching Monsters U. I told Gabe sure, he should go to this wine tasting event that was happening across the street. He could go hang out with other adults, get drunk, walk home. The kids and I would just stay in and go to bed early. He got ready to go. He went upstairs. Then he came down in his pjs and said he wanted to hang out with us instead. and I said: "OK, but then you can't complain later that you didn't get to go out."

And you know what? HE DIDN'T. He admitted that he was lame and he liked being with us more. He was choosing to have less of a social life. So husbands of the world who go hang out with the guys and then deal with wives who are angry with you, I'm WITH YOU. I know you are not lying when you say you don't care if she hangs out with the girls. You just legit don't understand why she doesn't do it.

I don't think anyone is asking us to do everything. At some point, the people who feel overwhelmed need to take responsibility for that feeling. If you don't cook, someone else will. Or they will eat spaghetti. Folks won't starve. I have to acknowledge that my annoyance with the messy house is my annoyance only. My husband and kids legit don't care. They don't see it. They don't think it's important. That hangup is mine, not theirs. So I pick up after people and then I yell about WHO DO YOU THINK IS GOING TO PICK THIS UP, THE MAGICAL CLEANING FAIRY? And the whole family looks at me like, who cares? The answer is that I do.

Also, I have always felt completely clueless as to how parenting leads people to stop taking care of themselves. So many women say that if you are a mother, you don't have time to shower, to go to the bathroom by yourself, to wear decent clothes, to get a haircut. If life was like the Internet, parenting would just be one long string of puke in your hair and dragging kids to the grocery store and taking a shit in the presence of others.

Nope, no, nein. My husband and I have always showered by ourselves, gone to the bathroom by ourselves, and left the kids with the other one while going to the store because it's hella annoying to take kids to the store. We claim every single evening as "Katy and Gabe time" after the kids go to bed. If I need a haircut, I walk to the fricking salon. If he needs a haircut, he buzzes it himself, because he's cheap and doesn't want to pay a barber.

When I was growing up, my mom stayed home. If we even thought of bothering her while she took her bath (every single day of our lives my mom took a long leisurely bath) or read the paper, there was hell to pay. She never sacrificed her own personhood or boundaries just because she stayed home with her kids. She hated the park, so she didn't go. She was the only one with a drivers license, so we could each pick one sport at a time, because she didn't like playing chauffeur.

I also don't see parenting as this inherently gross, unglamorous JOB. It's not just drudgery. And truth be told, I have never had puke in my hair that wasn't my own puke. That's not because I didn't take care of my sick kids, but because I figured out how to get them to puke elsewhere. I've never had conversations about disgusting diapers. Diapers are what they are. We all had to use them and we all probably will again. There's no martyrdom there. And when my kids have been disgustingly sick, and I've written about this before in what still stands as one of my favorite posts ever--I didn't feel disgusted, I felt bad for them. Their projectile vomiting was not about what parenting is like for me, but what illness was like for them. If there was vomit on the car upholstery, I'm not sure I cared. I was too busy being terrified my baby might aspirate.

I just don't understand the appeal of talking about how much parenting sucks, and then reiterating that you are the only one actually doing it. Now, if you are a single parent, you HAVE to do all of these things yourself. There is not one to take up the slack for you. That would be hard. Your life's calendar would have to take a backseat. I get that--it would be hard. But if you have another parent in the house with you, and you do everything, I just can't relate--sorry. I think it's time to either stop being resentful, or stop doing the stuff you resent.

This is what men do.

Just last night, I was reminded of this difference between men and women. I was lamenting to Gabe my current body. I've gained about 7 pounds since my second bout of cancer and I can't lose it. I was blaming hormones for a while and I think that's true to some extent, but last night I admitted to him that it's because I don't do all that strength training anymore. That training changed my metabolism. I still spin 5 days a week, take hour long walks every day, and do 20 minutes of abs. I exercise more than most people. I have strong arms and legs, but I am not as toned as I was even pre-chemo in the summer of 2013. At some point, I think it was because I worked out so much and then, well, it didn't matter. My cancer came back anyway. I had no other risk factors outside of being female, having breasts, and getting my period at age 11, but most of the risk factors related to weight and alcohol and everything didn't matter anyway because I am triple negative and the estrogen inducers aren't relevant for me. But then I thought, God, I did all that, and it was so hard to find the time, and then, well...for what? Maybe it's time to kick back and eat a damn sandwich. But it bothers me when my clothes fit differently or when I see pictures of myself in bathing suits a few years ago. And Gabe said this:

"You don't look any different to me than you did when we met. I think you look great. But the thing is, you can't complain about how you look and then say you no longer want to do the thing that led you to look like that, whatever that was. Either you have to be comfortable with yourself, or you need to go back to doing what you did before. I think you should be comfortable with yourself, and just let it go."

And there it is--just let it go. If you want to schedule and plan everything, do it. If you don't, stop doing it. If you find it mentally exhausting, clear your mind for something else. Recognize that your kids and your spouse are real, corporeal human beings who are separate and can do things for themselves. Go away for your weekend and don't leave instructions. I don't do that. I just leave. My husband does the same. We figure the other one has their shit together and can figure it out. Now, I did pick out Augie's clothes for picture day before leaving for a business trip, but Gabe got him in them and took the picture to send to me before walking him to school. The only reason I picked out the clothes is that Gabe has terrible fashion sense and I didn't want to look at a picture of my kid wearing something ridiculous.

But let me end with this. I hate the idea of a default parent for a reason that has nothing to do with gender, or the mommy wars, or working or staying at home or whether my husband has feminine qualities and I have masculine qualities or philosophical arguments about what any of that actually means. I hate it because if I am being honest, I wish that he WAS the default parent. I wish the kids didn't rely on me for anything. I wish he was the default parent because I am the parent who might not make it to their adulthoods. Back when I was first diagnosed with cancer, Gabe showed me an email that included well wishes for me. I scrolled down and read the whole chain, which I suppose he wasn't expecting. The email was from his ex-girlfriend, the only real significant "other" he has ever had. In the beginning, he was telling her about my cancer and his grief, and he said "I don't know what I will do if I have to raise the kids by myself." And the thing is, men feel that way. Women who have husbands with cancer feel grief and despair but they are rarely expected to wonder how they will manage if things go badly, because everyone assumes they will manage. My husband was terrified not only of losing me but of being left alone to raise our family. I could have been mad. I could have been jealous that he wrote to his ex. I could have gotten all wrapped up in gender roles and the high rate of divorce for women who have cancer. But...I didn't. He had the right to those feelings. The whole thing was shitty. I know he feels guilty to this day that he wrote that email. But all I can think is, why are we in this place?

Every time they get a crappy meal because I am on a trip I get pissed because I wonder what would happen if I never came home. I'm glad every time they go to him when they are scared because I know they would have someone to go to if I was dead. I carry that martyrdom with me, and I did not CHOOSE it, and I do not revel in it. I am jealous of his security in the idea that he will see them grow up. I am jealous that he says things like "when they go to prom, we will have to break this picture out!" and I say things like "If I'm still around when they go to prom..." or "you have to promise me that when they go to prom..." I was the parent who couldn't cook or even eat, who was skinny and tired and bald and maybe even dying, who couldn't hug my kids right after the mastectomy. They had to learn to be on the giving end of comfort. Gabe had to be a caretaker for me, even as I was doing so many things with the kids and work and everything else all in the middle of cancer. I am the one who has had chemo brain and actually couldn't keep track of everything even if I wanted to; I have felt frustrated and angry at my sudden forgetfulness. If there are mothers who feel overwhelmed at having to keep track of everything, there are some of us who are overwhelmed at losing the ability to be able to do so right smack in the prime of our lives. If there are mothers who feel responsible for their kids' emotional security, there are others who feel responsible for their kids' emotional troubles, and the latter is worse than the former--by a long shot. I was the parent who had the crushing job of telling both kids when my cancer came back. He didn't do it. He said he couldn't do it. I told him that I would do it, but that he needed to figure out how to have those conversations. He had to have his shit together this time. This cancer was not messing around. Just because we had a beautiful, interesting and eccentric little family did not mean that tragedy would not befall us. We might not deserve it, but we had to deal with it all the same.

At the end of the day, I don't think kids care who is a default parent and who is a back-up parent. I don't think kids think about their parents like that at all. Kids love their parents for being their parents. For all the kids out there who have an actual default parent, because the other one is dead, the only thing they wish is that the other parent was still there, being imperfect, watching basketball and yelling at them about shoes, going out to work or the gym or for a walk, but at least, miraculously, coming home again.

Day 1,513: Adulthood

I've had an interesting writing conundrum recently. I'll think of something that I really want to talk about, related to cancer, or gender, or the intersection of the two, and then it will seem defensive or like I'm justifying myself, and I will decide that I don't need to say that thing at all, because I don't owe anyone any explanations.

So instead I decided to write about that.

That feeling of comfort within myself--that feeling of not having anything to prove, is one that I have had for much of my life, even in my youth, but it was never really something I felt comfortable with until recently--in the last five years or so. It seems ironic to say that I felt like I needed to justify not feeling like I needed to justify my feelings or actions, but it's true. If you are always kind of on the outside of how people think you are SUPPOSED to behave--whatever that means--this can be a big part of your life, especially if you are a woman. You might think, why don't I feel guilty? Why didn't I cry? Why is he more affectionate than me? Why do I like to spend so much time alone? Why would I rather talk to my kids than play with them? Why would I rather sit quietly in a room with my kids doing different things than talk to them? Why do I hate shopping with other people? Why am I loud? Why am I first in the line to eat? Why did I never think to turn off the lights? Why don't I feel fat, or skinny, or ugly, or wrong? Why is that woman mad at me? Wait, now I now why she's mad at me, but I still don't get it--I still don't think that should've made her mad? Why is my first instinct after getting robbed at gunpoint to call my ex-boyfriend and watch an Arnold Schwarzenegger movie?

And finally, why have I never actually asked myself any of these questions?

The Internet is filled with blogs and stories about women second-guessing themselves and feeling negative, inadequate, guilty, overwhelmed and then triumphing over those things. The Internet is also filled with stories of women who are proud to flaunt stereotypes, who swear too much or are terrible at crafts or who love to golf or whatever. Or maybe it's not, but it just feels that way. The thing is, what I find myself craving is more about women, and yes, I do mean WOMEN, even though I'd love to see it more from men too, but I want to see stories of women who just don't care because they're way past caring.

Stories of women who are happy to be grown-up. And no, I don't mean aging gracefully or proud of their curves and laughlines or still into fashion or pantsuits vs. mini-skirts. I mean actual adulthood where you have earned the right to not care what anyone thinks about what you're doing or not doing.

I've been an old lady since at least 17. It was almost impossible to embarrass me as a teenager--the time when life is ruled by embarrassment. Just ask my friends and boyfriends. My mother did not give one shit about what people thought of her and seemed to not understand the concept of feeling embarrassed and even THAT didn't embarrass me. But the truth is, I had to be taught that lack of embarrassment. I had to see it to believe in it and to emulate it. I want more of that.

I want to hear more stories about women who don't know what stories to tell anymore. I want to think that there are other women who write blogs about cancer and have a lot of things to say about how isolated women feel when they don't react to cancer the way they are supposed to, and the way people's reactions towards women with breast cancer are so similar to reactions towards women who have been sexually harassed or assaulted (and no I am not speaking on behalf of others--just from my own experience, where the comparison runs true), but then they don't write those blogs because you know what? Mama don't have time to explain that to you. Think what you want, believe what you want, I am just going to keep on trucking because I. do. not. care.

I want to read something that makes me believe I am not the only one who didn't feel any epiphanies from cancer, because I had those already at least 30 years ago, from people who are not better parents or lovers or friends because they have suffered, from people who are just doing their best.

I want to hear about the people who remember with fondness and some kind of absurd longing and expectation their mother telling them "I like to pay the taxes and the bills and balance the checkbook. I like being a grownup. I like being in charge."

I want life the way it really is when you've forgotten what it means to be cool or popular or smart or athletic or whatever it is you thought meant something at some point. I want the story about the people who aren't trying to tell other people how to be better or less toxic or more grateful or more or less than the thing that they are. The story of the adults who accept the other adults and love them for being in their lives because life is short and, well, here we are. The story of a mother who is upset that her shy daughter told another little girl at a Halloween party that no, she didn't want to play with her. That mother told the daughter that she should've played anyway, even if she didn't want to, because the other girl was bored and lonely too, and for that moment, she should have cared more about the other person's feelings than her own. That mother knew she was asking her loner of a daughter to understand something that was beyond her years to understand but she didn't care, because she was the adult, and it was her job to teach her daughter that it's not about you. It's not--it almost never is. And then, that mother told her friend about this exchange and they both laughed and shook their heads, and the friend said, well, what can you do? Look at her dad. And pointed to the woman's husband, who was wearing Superman footie pajamas and sitting amongst a bunch of adults just looking down at his hands and not talking at all because he had had enough.



And no one cared. Because when you're grown, you can sit in the damn corner and do what the hell you want and pretty much no one is judging you and most likely someone is envying you.

I really don't know why I'm writing this. Maybe it was all precipitated by Renee Zellweger's face. All the drama and angst, the trying to figure out is it plastic surgery or just the fact that the comparison pictures were from 20 years ago? The women saying who cares, the women saying I care, the actress herself saying I'm happy. Me thinking, God is that what happens when we age? People keep asking us about our damn faces? About our happiness?

At some point, your face is just your face. It is the thing that helps you talk and see and interact with people. At some point, happiness is a means or an end or a goal but it is just one of many possibilities. The thing I hope to earn with age is not happiness or contentment or scars or wrinkles that serve as badges of honor or even wisdom. I want stories. More stories. I want ambivalence in the face of reaction. I want to be so old that my tiny stooped shoulders can shrug at the world and say, so? Think what you want. Let me tell you about the time...

I want to be old enough to have the ability to live outside of my own experience almost all the time because I have had enough of my own experience to see it as largely irrelevant. I don't want to be old and therefore wear purple. I want to be old and say, yep, there's purple. To hell with it. Or, bring on all the purple, because it's Monday.

I think of age as the privilege of seeing your life as a really interesting story that is sitting on the bottom of the pile of millions of interesting stories. I think of age as not having to worry about leaning in or leaning out but rather just...kicking back. Kicking back and flinging the ash off the cigarette that you're not supposed to be smoking and that you're probably holding wrong and just watching the people pass judgment on you one way or another and not noticing anything but the curl of the smoke.

I want more stories about how things are, not more explanations about how things got this way. Maybe I've failed at that for the last four and a half years, but I've tried, and I'm trying. I might be fully grown, but I have some aging to do.

I have a small story and I'd like to tell it here. It's a story about being a woman, a mother, a wife, a person who has had cancer. This story is maybe a paragraph long. It's a story of adulthood.



I was getting my hair cut at the salon the other day. I was going shorter than I have in a long, long time. I sat at the shampoo bowl and chatted with the woman shampooing my hair. She had baked banana bread and had offered me some, and we talked about banana bread recipes. I told her my daughter liked it when I put chocolate chips in it but my son liked it plain because he is like that. She asked me how old my kids were, and I told her 5 and 8. She paused and said "You will have such a beautiful life. It just gets better as they get older. It just gets better as you get to know them as adults. Enjoy it. It's a blessing." And for a split second I felt this aching pang, as I thought of how I might not ever get to know them as adults, that I might not ever experience that beauty and that blessing. For one second I thought, how could she know that she is making me confront one of my greatest fears and potential losses as I sit here waiting to get my hair done? And then, it happened. I didn't feel like that at all anymore, and I could tell somehow what she was really saying. She was saying, my husband is dead. My children are grown. I bake banana bread for the girls at the salon. I spend more time than is necessary washing your short hair. .

And so I thought to myself, this isn't about me at all. It hardly ever is.

I told her this: "That's what I've heard. I can't wait. Thank you." She told me I was done, and then asked if she had forgotten to offer me water or coffee and I told her she hadn't forgotten, and that I didn't need any, thanks.

There we were, lost in our own thoughts, but pretending we weren't, in order to live inside that brief moment of grace, in order to give the other person their moment of importance.

Grown.